Hey everyone,

Ben had an appointment at the Doctor yesterday and all went well!!! It seems that maintenance is getting off to a good start. We were finally able to get ALL of Ben's medicine in pill form and he is a happy little boy. I was shocked at the size of the antibiotic pill but he swallowed it with no problem.
Ben had Vinchristine in his port and his ANC was 1673 which has dropped since Easter but is still a reallly good number.

Love you all.

Daddy's Birthday!!

Ben was very happy to find out that it was Matt's birthday today!! He really thinks every day is his birthday no matter what we tell him so he was very excited that today is Matt's "too".
Ben asked me for a cracker today and I got down the box of cracker's and he said "No Mom, I need to play with Uncle Daniel's 'Poker Crackers'....I laughed hard and then I let him play with the poker chips.... I love my boy.

We go to the Doctor on Tuesday so Ben can have his next visit. This means another round of steroids and he will have Vinchristine in his port. Should be an easier day since we will not have a spinal tap!!

Happy Easter

I hope everyone had a lovely Easter weekend. We were able to take Ben on his first trip since getting here to Kentucky. We drove to Matt's Mother's house to visit for Easter. The kids had a blast and we drove home tired but fulfilled. We got to go to lunch with Matt's Grandmother and visit with her.
Savanna was happy when I came home and the kids were thrilled to see her. I started Babysitting Savanna ( my niece) during the week when my brother is working and the kids and I are already super attached. It broke Ben's heart that she couldn't come with us on our visit, but she was going to see her mom on Easter Sunday.
Ben did wonderful on the trip and despite a small cold that we initially thought was allergies he is doing well. So far Ben's first month of maintenance has gone well. His counts have stayed up to good levels. They will continue to monitor him over the next few months to be sure that they will stay up and we are praying they will. He is in a wonderful mood and very energetic most days!!
We miss everyone in Phoenix but we believe we have finally found a good church to go to!!

Ben's next appointment is next Tuesday the 13th!!! I will post again as soon as we know the outcome of the tests that day!!!


Love you all,

Jamie

March

To everyone who so faithfully follows our blog I am sorry it has been a while since I posted. In February we found out that Ben was through with the introduction phases of his treatment and ready to begin maintenance. To begin maintenance Ben's ANC had to be at least 750 and it wasn't until last monday that his counts went up high enough. On Monday last week his counts were 2465. This is a good number and the highest Ben has been in a while. He went to Louisville on Tuesday last week to start his maintenance treatment. He had a lumbar puncture and the administered the methotrexate into his spinal fluid. He also recieved Vinchristine into his port. This will be repeated every three months. Initially we thought it would be every two but they let us know at the appointment that it would be three. He has more Chemo that he will be taking at home. Every day for the next three years he will be taking a Chemo pill called 6MP every night before bedtime. He will also be taking Methotrexate (the same that has been given into his spine) every Thursday except when he has spinal taps because he will recieve it in his spine those weeks. He will be taking Steroids the first five days of every month as well. He has taken Steroids and 6MP before so we have a good idea that he handles these drugs pretty well. He has never taken the Methotrexate orally before so we will be giving him that this Thursday for the first time and are praying for God's blessing that he will do well with this too.

Ben is very excited that his hair is growing back! He takes off his baseball cap and shows everyone the new growth with a big smile on his face. It is growing in very dark brown which is different than how it used to be. They told us that Chemo can change the color of your hair, the texture, and some kids even get super curly hair when it returns. So far it seems to be as straight as ever but just quite a bit darker.

We love you all very much and I will continue to post every couple of weeks unless something changes. Please continue to pray for Ben that God will continue to heal his body and that he will not come out of remission. Thank you all for provide to us in your prayers. We can see God working in our lives every day.

Love
Jamie

Great News!!!

We got good news this week. Ben is in "maintenance"...this is such a great thing for him!! Maintenance is 3 years long as long as their are no delays and it starts on March 2nd!! Maintenance cycles are 57 days long. Ben will only have to go to the Dr. once every four weeks now! On Day one of the cycle Ben will have a spinal tap and Methotrexate(Chemo) will be injected into his spine. He will also have Vinchristine(Chemo) in his port on day one as well. He will have to take steroids on days 1 thru 5 each month. He will also have different take home Chemo drugs in pill form to take through the cycles as well. It sounds like a lot but this is actually much less than we have been doing every month so far.
When Ben had the ERRI-C treatments they did warn us that his ANC would probably hit zero. This has happened so we are being very careful about exposing him to anything. They also let us know that his hemoglobin(red blood) and his platelets (the cells that make blood clot) could get down to dangerous levels requiring blood transfusions. This did happen this week and Ben had blood transfusions on Wednesday and will most likely have to have more on this upcoming Tuesday. He did well during the transfusions and about twenty minutes into the three hour process he was feeling much better. When his red blood counts are low he feels very sluggish and grumpy. We can tell that they have lowered again because he is pale and low energy again.
This has been a very encouraging week for us and we are excited that we can now begin new plans for visiting Matt's family and allowing Ben to do more things that we had to restrict until now.

Thank you once again for all your prayers and support. It has gotten us to this point!!! PRAISE GOD!!

Jamie

Ben's Letter

Today it is snowing at Poppy's house. Grammy got a new horse for Daddy. His name is Matt ( haha he is telling you Daddy's name not the horse). I went to the doctor and I got tubies ( his port IV was accessed today). Sissy's name is Olivia.



Ben

Good Day

We went to the Louisville this morning and found ourselves to be the only appointment that day for the doctor's because it was snowing so not many people came in. So we zipped right through and were home before noon. Ben is doing well and is an extremely happy little boy because I got the Dr. to rewrite all his prescriptions to pills instead of liquid. THANK THE LORD that he has learned how to swallow pills because his Zofran which is anti-nausua medication actually makes him throw up. To his credit I tried just a little bit on my finger and I threw up too. Also his Zantac is now in a pill too. These two prescriptions really were very difficult for him and us. We felt like Giant jerks making him swallow them. We would sometimes have to hold his nose and mouth closed so this is such a blessing and answer to prayers. The Dr. & the pharmacist said that it is really abnormal for a three year old to be able to swallow pills but we are counting ourselves blessed.
We are doing one more week of the ERRI-C treatment so four more days of Matt or my Mom giving him his Chemo. Next week he will have another appointment but we are not sure when.

Pray that God will give Ben yet another good week. Dr. Bertalone said that the second week of ERRI-C tends to be very difficult he said we needed to be ready for bad nausua and vomiting, high fevers, and tremendous mood swings. We are praying that we are in the lucky few who do not experience this but we will have to wait and see.

Continue to pray for us, for peace, strength, understanding, and faith.

Love Jamie